Now that that's over. This picture is a pretty a accurate representation of what i have been going through for the past ten years whenever any water touches me.
TESTIMONY
I was born a long time ago and was a physically normal child. nothing wrong with me at all. but then in my early teens something horrible started to happen. Every time i got out of the shower my arms and legs would itch slightly. Not a regular itch but a kind of prickly itch. I didn't think anything of it for a while because it was so slight and i figured I just had dry skin or something. Well as time went on this itch got worse and took longer to go away. It was getting annoying but it was still bearable. Then I noticed that I was getting itchy on my back whenever i would sweat. Not to long after that and the itch would happen when i went swimming and then when it rained. I started to believe i had the most sensitive skin on the planet and got organic no sulfate shampoo and conditioner and the same with soap and body wash, but nothing seemed to help. I started to frantically search the internet and every other kind of itchy allergic reaction came up except the one that fit my description. By this time, whenever i showered my skin would begin to itch from the end of the shower (i normally took quick showers about 10 min long) to 30-45 min after. This itch felt like someone was pinching every nerve in every extremity all at the same time and i had to scratch them all. This maddening panicked scratching would take over and all i could itch and scratch and cry in distress.
I was pretty embarrassed about this so it took me a while to go to the doctor. meanwhile i stopped swimming (which in my childhood i absolutely loved to do) and started to avoid water in any way possible. This problem started to really mess with my quality of life. After a while i realized that it was easier to take baths in very hot water. I would fill the tub with the hottest water possible and soak in it till it sort of cooked my nerve endings a little bit. Then when i got out of the tub i would not feel the itch so much until my skin went back to being uncooked. Being able to take only baths is a major inconvenience and if you don't believe me you just try it. Then if you think it can't get any worse guess again. This itch started to happen in the morning when I would get out of my nice warm bed and into the cold bedroom air (i always liked to leave my window open at night so by morning it gets a little chilly) and here comes the itch. WOW!!! ARE YOU KIDDING ME?!?!?!?! This ridiculous thing started to take over my life completely. I felt like a leper.
Well i had finally had enough and decided to go to the doctor to see if he had any clue what this was. And of course he didn't however he did give me a referral to an allergy specialist. This guy scratched my arm with every thing that should of caused some histamine reaction and nothing happened. Then he went ahead and told me that it was probably in my head. I was to nice to tell him the thoughts that were going through my head about what he can do with his diagnosis.
A couple years went on and i suffered in silence with no one except my mom and my best friend knowing. This isn't something I wanted to advertise because 1. it sounds stupid, I mean who in the world is allergic to water and 2. you know people are going to judge you over something like this. Well I decided to go on the internet and research some more and i found this aquagenic pruritus thing that matched EVERY THING I HAD BEEN GOING THROUGH!!!
Aquagenic pruritus is a skin condition characterized by the development of severe, intense, prickling-like epidermal itching that is without observable skin lesions and that is evoked by contact with water
SO IT'S NOT IN MY HEAD!!!!!!!!!!!!!!!!!!!!!
Apparently i am allergic to water. VALIDATION. And with further research I come to find out that there is no cure for this illness but there are some treatments that could work. I decided to go back to my doctor and tell him what i found and he still didn't believe me or know whats wrong with me. This time he sent me to a dermatologist. I went to the dermatologist and told her all my symptoms and she immediately confirmed that it was indeed aquagenic pruritus and she said that this is very hard to control and began to set up a program. I was to take two strong antihistamines a day, one in the morning and one before i went to sleep. Then she also wrote me a prescription for some steroid cream and let me loos, I did what she said and I have never been so groggy and tired in my life. Two antihistamines? NO. And they didn't work anyways. and the steroid cream i was to put on right after i finished my shower but that stuff stank so bad and it barely took the edge off.
Finally after getting super frustrated with the whole situation I stopped the whole treatment and decided to go online to see if there was anyone else out there going through what i am going through right now, but i was not hopeful since apparently this is a very very rare condition (apparently). However I found a yahoo group forum thing with all kinds of people with this condition. I guess it's not as rare as they thought. Their main thing was sharing what kind of stuff worked for them. I dove in reading all their stories of their personal struggles and the kinds of things they tried that seemed to help them. Many were prescribed the same kind of steroid and antihistamine regiment i was and they too said it barely helped. Then I started to stumble across some people that were saying that sun tanning helped which i never herd before. And then i stumble across some guy saying that he took 1,000 IU of vitamin D every day for a month and he was able to get rid of this. GHASP! if sunlight and vitamin D are things that help then this must be the Vitamin D Issue.
This really got me thinking about my childhood because i know i was always out side as a kid and i always got plenty of sun. Then i realized that when i started to get itchy it started in middle school when i would stay mostly inside. To understand whats going on here you need to know that your body gets vitamin D in two ways. Absorbing it from food through the gut and from sunlight. If this problem is a lack of vitamin D then there is a glimmer of hope at last because there might be a chance to get this mess under control.
So finally I got myself some Vitamin D supplements and mine were 5,000 IU (International Units). I took these pills, one a day for a few weeks and i can not believe it. IT WORKED!!! NO MORE ITCH!!!!! I was going around the house telling my mom every five minutes "Hey! Guess what. I TOOK A SHOWER AND I DIDN'T ITCH!!!! This is like a miracle has happened in my life. Over ten years i have been dealing with this debilitating condition and the solution for me was as easy as Vitamin D. I am starting to think that my gut doesn't absorb Vitamin D like it should from food. I know i have a lot of gut problems because i am also allergic to gluten. But i guess if i flush my system with as large a quantity of Vitamin D as i have, some finally seems to get in there.
I have been able to shower without consequences for about five days now and i couldn't wait to get this on the internet. I am finally a free human being. I can walk around in a cold atmosphere with a tank-top on and my shoulders don't get itchy anymore. I can take showers and not itch. I can't wait to go swimming this summer. My options are now seemingly endless.
I would now like to re-mention that this was just my story and if you want to do this you should do it with doctor supervision. That being said if you do embark on this journey (with doctor supervision) i would love to here how it goes for you as well. I plan on calling my dermatologist and telling her what happened so that maybe if she has other patients and since she is a professional she can help them out. Please let me know of your stories if you struggle with what i had gone through. My email on here isn't really the one i want to use. If you would like to contact me and tell me in private what your story is email me at
itch.master@yahoo.com
Or if you want to comment here than you may also do that. Thank you for reading this and best of luck.
One more thing really quick though. If i didn't have enough Vitamin D in my system all these years then i didn't absorb the calcium i need because you need Vitamin D to be able to absorb calcium into your bones, ligaments, joints etc. This makes sense because i have always had these weird ligament problems. it felt like they were too loos and would get stuck or caught on the anatomical stuff around them. That probably sounds weird and confusing but if you have this then you know what i am talking about. Any ways this should get better as well if this is what i have been missing. Can't wait to see how my body continues to improve and again let me know of your stories as well.
Thank you so much for sharing your story. It was posted a year ago and I just came upon it. Your ordeal sounds just like the experience of my daughter. She has been tortured for well over 10 years. Are you still finding relief from vitamin D? My daughter had her Vitamin D level checked and it was within normal limits.
ReplyDeleteI hope your daughter has taken it, it works!!!
DeleteThank you very much for sharing your experience and just to know you and for rest of itcy people that your story is completely the same as mine and the best part of it is that I found few weeks ago on web a guy on forum sharing his experience and telling how vitamin d3 helped him and I try it and its working the Itch is gone!!! I am using Solgar ampulas vitamin d3 . Best regards !
ReplyDeleteLi sua historia e sofro com o mesmo problema a 17 anos e sempre reparei que ao me bronzear não sinto essa coceira pós banho e se ficar muito tempo sem sol o problema retorna.
ReplyDeleteOMG vitamin d actually helped me. I had the worst flare up for MONTHS, it was debilitating- I teach fitness, and couldn't wear workout pants, or shower before work because I would itch... It's gone. 6000 IU at night, 2000 in the morning for good measure... 2 weeks later, no itch. THANK YOU!
ReplyDeleteAs an update... I have been taking 10,000 IU's every day since I posted this, for over a year now, and have not itched like I was before since! (When I would flare up I would have to take off my pants, get in the bath or get under a microfiber blanket, I'd be crying, pacing, scratching, but kneeling my itching thighs in front of a space heater worked best). After I ran out of the 10,000 IU bottle, I switched to a 5,000 IU daily just for convenience sake- I sometimes get a slight itch, like the feeling I would get before it went into the full blown crazy itch - but nothing like it was before. I think it best to stick to over 5000 IU's, for myself. I can't believe this worked, and it is the weirdest symptom of a deficiency ever, but I just wanted to share with everyone, it really does work - just find the IU that works for you. It does take a couple of weeks for it to build up in your system, so be patient and be consistent.
DeleteThanks for your story. I have a good friend who has this condition and she's going through a tough time with it right now, she is taking meds (I don't know what) but they seem to be having no effect whatsoever. I'll share your story with her - hopefully she can find the same relief you have and get her life back.
ReplyDeleteOmg this, I must try. Thank you for sharing.
ReplyDeleteIt has been more than 20 years living in hell i can't bathe i can't wash,i can't walk in the rain i have used so many remedies and um just crossing my fingers and hoping vitamin D will work.
ReplyDeleteAre you still free of the itching after all this time? I have had this condition for 2 years now and have to have very short showers and wash my hair in the sink!!No swimming at all. I have tried homeopathics, acupuncture, anti-histamines. Nothing has worked so far! I am hoping the Vitamin D sorts it. At 35c here in Australia I just dream of swimming......
ReplyDeleteomg it been..10 years of hell for me now shower is my worst enemy i take shower once every year because this itch is unbearable and the thought of water on my body makes the itch come again and nothing seems to work so i think this vitamin d would
ReplyDeleteI really really really Thank you a lot... You have done so much good to so many people.
ReplyDeleteThanks for sharing. 8
ReplyDeleteI have started on the vitamin d and I am also using capsacin cream for the last two weeks no itch. Thank God. I will let you know of my progress
can you please suggest me the brand name of capsacin cream
DeleteI have had AP for 15 years now, and I have a vitamin D deficiency. I take 5000IU a day and it doesn't seem to give me any relief. I literally just finished a three minute cool shower and I'm contemplating peeling my skin with a dull knife. I have tried so many different suggestions and I get no relief. It's torture!
ReplyDeleteUp it to 10,000 a day and see if that helps!
DeleteTry the 60000IU capsules, they've sorted me out after living with the condition for 24yrs
DeleteI have a post of my story at https://communityinformer.wordpress.com maybe that will help you.
DeleteI had AP for a while - really really horrible. Somewhere on the web I found a person who had sorted it by staying well hydrated ie drinking ALOT more than usual. IT WORKED FOR ME! Please try it - totally harmless and free and it might work for you too. Just drink an extra 4 pints of water a day and drink if you get up in the night. Do this for a couple of weeks. It's such a relief to be able to shower without the terror :)
ReplyDeleteThanks very much, I've lived with the condition for 24yrs now, I don't want to remember how i itched this morning coz of a cold shower,, I've been doing very hot showers over those years and trying alot of gels and medications to no avail, I'll start the vitamins tomorrow morning.
ReplyDeleteI bought 60000iu vitamin d3 capsules, very cheap, at 5dollars, 4capsules, to be consumed in one month, meaning a capsule a week, I've taken 2 capsules already, and my friends, this has worked magic for me, no more itching, I can bathe with ice cold water, am so excited ,my 24 years condition is now healed, thanks alot who ever brought this discussion here, am so happy.
ReplyDeleteCan you please tell me where you bought the vitamin d 60000iu. I need some to buy
Deletehi,i normally buy them at local phamacies here in Kenya
DeleteThis makes sense. I have struggled with this problem for over 15 years. I found that using a particular soap and drying immediately, putting on lotion and dressing quickly in a warm room really helped. But I was surprised when on a recent Caribbean cruise, I was able to swim, be in the cool ocean and shower with no itch! It didn't make sense... but now it does. There is nothing like the strength of the Caribbean sun. I tanned even through my sunblock. Now that I've been home a few weeks, the itch is back. Though I do take about 2000 IU of vit D a day, I will be trying out a greater dose in hopes of complete relief.
ReplyDeleteSlept this afternoon, and woke up itchy due to sweat. It hurts that I always have to take a very hot bath everyday even on very hot days. I pray vitamin d works for me. I'm so close to tears now. The only people that understand this are my family. Every other person jokes around whenever I'm itching. I can't wait to try this and feel normal again.
ReplyDeleteSlept this afternoon, and woke up itchy due to sweat. It hurts that I always have to take a very hot bath everyday even on very hot days. I pray vitamin d works for me. I'm so close to tears now. The only people that understand this are my family. Every other person jokes around whenever I'm itching. I can't wait to try this and feel normal again.
ReplyDeletePlease i have been suffering from AP for almost 13yrs now,I have done every medical test available but still no trace on the cause of it.The only relief I get is from taking antihistamines and perilion (2 tablets each,three times daily ),and a warm water bath.if I stop taking these drugs for a day,the itching starts the following,which means I have to take this drugs daily and I probably don't want to live on drugs.please any one with possible treatment or cute should please assist.
ReplyDeleteI have a post of my story at https://communityinformer.wordpress.com maybe that will help you.
Deleteim so glad i came across your story i have just been told i have Aquagenic pruritus and i can not wait to try vitamin d and pray to god it actually works
ReplyDeleteCame across your story last month I got 1000iu of vitamin d3 and the itching began to reduce after two weeks and then I ran out and the itching got worse, now I'm back on 5000iu and I'm never running out again!!
ReplyDeleteHey James my husband suffers from this we just tried 2,000 IU and it didn’t work . Where do you buy your 60,000 IU ,It’s hard to find in stores. After taking the 60,000 IU how long did it take to go away? And did you have any side effects ?
ReplyDeleteHi Sandra,we buy this in Kenya,at ordinary pharmacies,@5dollars,4capsules,taking you for a month
DeleteMy daughter began to suffer from aquagenic pruritis at the age of 4 and it took us 4 more years to discover that she had celiac disease and vit D deficiency is very common in celiac disease due to the damage to the cilia in the gut. When we eliminated gluten and dairy and introduced supplements, including vit D, the symptoms went away! It is definitely worth ruling out any autoimmune related condition like celiac! We were told for years that the aquagenc itching, the ice pick headaches and the itching scalp were psycho-somatic! However if her food is contaminated with gluten the itch returns........Your body speaks when there is a problem. Work to find the source...........
ReplyDeleteI am going to try this out and see how it goes. Good luck to me
ReplyDeleteI started taking vitamin D. 5,000 iu. Had a blood test that said I had plenty of D in my system. I kept taking it anyway. After 5 weeks I haven't itched once! Can you ever stop taking D. Does it come back?
ReplyDeleteI am 47 years old and I’ve had AP all my life. Worst in summer. And living in Florida doesn’t help. I am in so much distress since July humidity started. Ice pack on the itchy area helps me but I get so many attacks at work and in random areas where I sweat. So I keep on moving the ice pack on my body to get some relief. Other than taking really hot bath and add baking soda in the water and during the day using ice packs, I have found no relief. I will try but D. Thanks for this blog. I have absolutely no understanding from my husband. He says “you think about it too much”. It’s so great to know there’s hope and support.
ReplyDeleteAdriana,there's hope,try 60000iu
DeleteThanks so much. I bought vit D 5000 IU today and started. I pray that it will help me.
DeleteDid vitamin D help you guys right away? I just started today and I’m having a lot of trouble. I’m going crazy with itching. I want to give it time to work but I seem to feel a lot worse after about 6 hours of taking first dose of 5000 IU boy D
ReplyDeleteHi Adriana,kindly get 60000iu,it's more stronger
DeleteI will. Thanks so much.
ReplyDeleteyou can take 1 to 2 garlic in empty stomach with water in morning this will help you you can take this process for a week and you will feel better and you will see that the itching is gone
ReplyDeleteLifework,the garlic won't work for aquagenic pruritus,not unless it's a different condition
ReplyDeleteJust stumbled upon this. I live in Nigeria and iv been to various dermatologist. Tried piriton,loratidine every antihistamine possible,steroids,nothing has worked.
DeleteI think I need to try this vitamin D problem is getting the 60000 or so you suggested.
Does it work with a lesser dose plus what else can i do. Thanks
I have this itching for 7years and joint pain i have seen many dermatologist but not works i hope vit D will work thank u
ReplyDeleteHi, is it working now?it my second week of using vit d3 5000iu and no different still. Should I continue using it.
DeleteBeen a slave to this pain for almost 10 year now. I will try vit d3 5000iu pray I see result.i live in Lagos,Nigeria.
ReplyDeleteHi Seun,try a stronger vitamin d,preferably 60000I,and leave a sugar free life,also lower your wheat consumption and also try and quit all dairy products
ReplyDeleteHi, I am from Kenya. I have suffered for such a long time, do I need to take vit d supplements while I am exposed to sunshine everyday
ReplyDeletestop milk and all dairy products,stop sugar and all products that consist of processed sugar and stop consuming anything made of wheat
DeleteBuy vitamin d3, 60 mu, and avoid dairy products, sugar and wheat products
ReplyDeleteBut lets as much as possible try and stop consumption of wheat products,dairy products a sugar
ReplyDeleteI have had the same experience for the past 10 years. I too stumbled upon Vitamin D on a aquagenic puritus forum. I thought this had to be worth a try as I noticed when I was at a lake out in the sun all day I did not itch if I got wet. Problem is I burn easily so I had to lather up with sunscreen but it did work. Of course you should be using sunscreen even if you don't burn easily. I have taken Vitamin D with success. I started with 5,000iu once per day for approximately one month and did see an improvement so I upped it to 10,000iu per day and it has helped a great deal for about one year now. I do still itch but it is not near as severe as before and dissipates more quickly. I have told my doctor and dermatologist but neither of them thought it was "the cure". I'm currently looking for a new dermatologist. I am curious if there is a more potent formula or in a pure form out there other than just over the counter at Walmart or Target. Hoping others can benefit from this but please check with your doctor first before taking excessive amounts of Vitamin D!
ReplyDeleteHello,
ReplyDeleteI've been with this condition for almost 9 years now and I'm just 24...it comes with this emotional rage for me, my siblings stay away from me when it starts.
When I mention this to people, they try suggesting things to me, some make me feel it's my fault, others try to tell me it's my mind and I'm insane..they never understand..it's hell during the rainy season....
I've gone to the dermatologist and they don't even know what it is, they were treating me for something else...I tried some herbs in 2014 though, it worked for few months and the itching came back... This itching comes even when I don't even come in Contact with water at tines, sometimes when the atmosphere is humid, I stopped using sponge, I now use hot water, try to run outta the bathroom as fast as I can, no wet clothes or towels, no dirty clothes or towel, no dirty room or scattered room, I try as much as possible not to think about dirty or disgusting things...and so many more, it's just so hard
I'll try this out and hope it works for me.
As an update to an update, 5 years after stumbling upon this. Vitamin d supplementation helped me for two years- and then without changing anything, it flared up again for months. I discovered a Facebook group with a bunch of us itchhies- someone mentioned beta alanine powder, and it WORKED. It helps preventatively before a shower, and also to help the itch go away much faster. It’s not comfortable because it makes you itchy/tingly/electric feeling (lights up the same nerve signals) but at least it’s a short term solution. Maybe one day someone will figure out the root cause. I truly do think vitamin d is related, as it has a role in myelinization of the nerve sheaths…
ReplyDelete